Support Independence

Counter the Stigma of Epilepsy

Acknowledge that discrimination exists. As if epilepsy itself were not enough to deal with, sometimes social and psychological challenges come with it. A lack of information and understanding on the part of strangers, co-workers, and children at school can make for some awkward moments, which can affect the person you care for. Demystify epilepsy where you can.

Counter negative stereotypes with the truth. For the most part, any remaining negative feeling surrounding epilepsy comes from lack of knowledge, confusion about what epilepsy is, and outdated ideas. The good news is epilepsy is going the way of many other conditions that had biases attached to them a generation or two ago. While it is not your job to educate people, it is sometimes important to do so, especially where it can make a difference.

Identify discrimination and support an appropriate response. No one is immune from awkward social moments—but discrimination goes above and beyond the ordinary. If you believe the person you care for has been the victim of actual bias on the part of a business or a school, or is being bullied or harassed, take prompt action. If appropriate, look into the legal aspects of the situation.

Recognize Workplace Issues

Encourage a practical approach. If the person you care for chooses to tell a supervisor, a co-worker, or a human resources representative about her or his condition, see it as an opportunity to educate. Having some idea of what a seizure is and what to do if it occurs may make the person more comfortable with the situation—and make your loved one’s life easier. Also encourage the person you care for to state the degree of medical privacy he or she would like to maintain in the workplace.

Put safety first. Where safety is concerned, disclosure is a must. If you’re unsure whether the condition or treatment regimen of the person you support will interfere with job performance, suggest getting the healthcare professional’s advice.

See if the workplace can offer accommodation where it’s needed. Encourage a practical discussion about the condition and any special needs. If the person you care for needs accommodation from an employer because of epilepsy, the law may support a "reasonable accommodation." Such adjustments may range from scheduling more flexible hours to taking a seizure-detection guide dog along to work.

Find out about workplace rights. The Americans with Disabilities Act forbids prospective employers from asking during a job interview whether someone has a disability. Many people decide to offer such information only on a "need-to-know" basis—unless it has a direct bearing on the job. After a job offer has been made, an employer can ask questions about medical history—especially where relevant to the position’s core requirements.

Know what to do in case of discrimination. Employees with epilepsy sometimes face discrimination in the workplace. If the person you care for encounters harassment or discrimination, it should be reported immediately, in writing; if discrimination persists, look into legal options without delay.

Help Your Child Deal With School, Peers, and Play

Educate the educators. Get to know your child’s teachers, school administrators, and the school nurse. Tell them what they need to know about:

• Your child’s condition and treatment
• The types of seizures your child may have
• What to do and what not to do in case of a seizure
• How to get in touch with you
• How to reach your child’s healthcare professional
• How your child’s condition and its treatment may affect work, play, and behavior at school
• What common social and emotional challenges come with the territory
• The degree of privacy about the condition that you and your child prefer to maintain

Get to know your child’s coach. Inform your child’s athletic coach if your child plays sports—especially if there is travel with the team. Make sure the coach has all necessary information, including basic first-aid instructions, your number, and the healthcare professional’s number.

Get to know the parents of your child’s friends. If your child is spending a lot of time at a friend’s house, let the parents and the friend know what to do in case of a seizure. Where a plan is necessary, have a plan.

Find—and train—a dependable sitter. An informed sitter, trusted by both you and your child and instructed in what to do if a seizure happens, can help you get the time off you need when something comes up or you simply need a break.

Look into getting medical identification for your child. Wearing or carrying medical identification every day can help to protect your child, ensure safety in public places, and encourage independence.

When your child is old enough, help her or him get comfortable talking about epilepsy. You won’t always be there to intervene or assist. Encourage your child to have practical conversations about epilepsy with people who need to know about it.

Try to strike a balance. You want to protect—not isolate—your child. Although epilepsy can bring an added level of risk, in most cases it need not prevent your child from having a rich and active social life.

Tell your child about the special risk from street drugs. Everyone tells young people to avoid using street drugs; this is especially important for young people with epilepsy. Not only are street drugs dangerous in their own right, but, because they can interact with antiseizure medications in unpredictable ways, they can cause harm or interfere with treatment. If you need support for this conversation, ask your healthcare professional to go into the details.

Have a backup plan. During an emergency of any kind, you may need other adult support givers who can step in on short notice, other means of transportation, and a healthcare professional you can reach when your child’s healthcare professional is not available. If there is a chance you will need any of the above, plan now.

Remember—growing up can be difficult for anyone. Epilepsy doesn’t let your child off the hook for all the other challenges involved in growing up. It also shouldn’t keep your child away from the fun—or from getting an education.

Young people who have been through what your child is going through have a lot to say. The Epilepsy Foundation has a community Web site for young people. Show your child how other young people have met the challenge of epilepsy with courage, humor, and self-respect.

Talk with your child about appropriate responses to difficult social situations. Don’t expect the worst from your child’s peers. They can be a great source of support and, given the opportunity, can help keep your child involved with school, sports, activities, friendships, and all the other important things. Unfortunately, there can also be rough spots. Some children tell jokes as a way of covering their own embarrassment and uneasiness. Encourage your child to respond appropriately when someone is out of line. If it is a teacher or someone in authority, get the facts; it may be your job to respond.

Deal with problems in school head-on. If your child is having problems concentrating in school because of epilepsy or its treatment, let the teachers know. If the problems are minor, the teachers can probably help your child work around them. If your child is really struggling, look into whether an Individual Education Plan (IEP) may be right for her or him.

Help Make Driving With Epilepsy Safer

Put safety first. Safety is always the primary consideration. The person you care for must have a condition that, when medicated, will not affect driving and must meet legal requirements to get behind the wheel. If you’re not sure about how well the treatment is working, or have any doubts about whether seizures are likely to recur, it’s a question for the physician.

Offer to help with the transition. If you drive, and your loved one is ready to get on the road but is not yet entirely comfortable behind the wheel, you may be able to help. Offer to go along and sit in the front seat during the first few drives. You can always take the wheel if the person you care for feels uneasy.

Know the law. State laws vary, but most insist on a seizure-free period of a certain length, a healthcare professional’s evaluation, or medical reports, often in some combination. Differing conditions are treated differently in some states. Learn about your state’s driving laws and their impact on your loved one at the Epilepsy Foundation’s Web site.